No News is Good News, Unless It Is

February 28, 2010

One of the blessings we've had in dealing with Molly's Spina Bifida is that she hasn't had to have many surgeries.  Lots of SB kids will undergo shunt revisions, tethered cord surgeries, and other procedures as complications arise or their growing bodies need fixing.  I've sort of taken for granted that she was the exception to the rule.  She walked at 22 months and had only required one set of SMOs at age 1 and, recently, shoe inserts.  She has never used a walker or crutches.  She didn't require a shunt as her hydrocephalus didn't increase as her neurosurgeon expected; that in itself is huge.

Well, our luck didn't hold out.  We learned in November that the two syrinx in her spinal cord at the base of her skull needed to be dealt with.  This is due to Arnold Chiari II malformation and, to be honest, was something completely off my radar.  She will undergo surgery two weeks from tomorrow.  This should help (hopefully eliminate) the headaches she's been having almost daily.  The surgery is a "now or later" sort of thing, so we opted for now. 

Yesterday at urology clinic, we were told that she will also need another procedure in the near future.  Molly has also been fortunate in the UTI department, but in the past few months, she's been treated for three.  She was averaging one a year.  Evidently, the UTIs have been caused by e-coli due to her bowels not being completely empty -- ever.  I thought she was really doing pretty well in that department because this year she's had fewer accidents and still manages to have a BM every other day or so.  I had attributed the UTIs to her not taking the time to wash her hands well enough when she caths at school.  Well, that's not the case so,  her urologist has recommended the MACE procedure which, as I best understand it, is like a reverse enema.  She'll have a place in her belly button where we'll flush a solution through a tube and that will push everything on out in a very natural way.  We should only have to do this every couple of days and we were told this should eliminate any accidents.  That's huge.  Even though this year has been better, she's still not 100% free of soiling on occasion.  Being able to control this will give Molly so many more opportunities and hopefully relieve some of her anxiety.  This, we think, is good news. 

I really feel for my Molly girl.  She deals with these issues very well, although she did go through a period of denial and, I think, some anger about having SB last school year. I've always approached SB with her as "it is what it is, deal with it" because I knew that any sympathy or making excuses for her would just hinder her independence.  That's tough.  I hate it for her; I really do.  I worry about the future, about her losing her mobility, about her having friends who will stick by her side, about boyfriends, about a husband, about having children.  Living on the margin is tough and I'm afraid it's going to be even tougher as she grows up.  I know it could be worse.  I absolutely know that. 

I have found myself online a lot lately, looking in on SB chat boards and scoping out blogs.  This is something I haven't really done in several years.  I'd gotten pretty comfortable dealing her SB issues as we knew them.  Oh, well!  Here we go.   

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  1. Welcome to the bloggy world. Check out

    I will be checking back on Molly and she is in my prayers. Glad I found your blog.
    The Park Wife

  2. Hi, it's Tiffany! I am back on Blogger!!

    I am and have been praying for Molly. I hope that she continues to do well since her surgery... I struggle daily with Logan and the reality of his Spina Bifida. I bought a book called Children with Spina Bifida some time last year and I started reading and after I got through the orthopedic chapter, I couldn't continue reading any longer... I just sat and cried. I haven't picked up the book since to finish reading it. I wonder every day if Logan will ever be able to run and play with his big brother and his friends and I face that reality every day when I see Alex running or walking and I look back at when Alex was Logan's age now... I grieve. I know I shouldn't but, I can't help it. It hurts to see him struggle. :-/

    You and Molly give me hope! :-)


    In case you don't have it, my new blog address is!

  3. Tiffany,
    It is perfectly fine to grieve! Even as well as Molly is doing, I still have those moments when I'm saddened b/c life is different for her. I worry more than I need to about all kinds of things. It's a journey, isn't it? Hang in there!


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